At the end of my rope :(

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Gemma25
New Member


Date Joined Jan 2017
Total Posts : 7
   Posted 1/12/2017 9:00 PM (GMT -7)   
Hi all,

I am new to this forum and didn't really know which illness to start writing to since I have multiple (CFS, depression/anxiety, Crohn's disease, arthritis, gerd, etc). I wanted to start with CFS because it's making the largest impact on my life right now. I was diagnosed with mono about five years ago and felt like I never fully recovered from that. I've always had severe crohns and I'm sure that has a lasting impression on my fatigue, but I just don't know what else I can do for this fatigue. I just quit my job yesterday because I couldn't do it anymore. It's not a normal fatigue, and that's what annoys me most about explaining this to people because they just say "everyone gets tired but you push through it, that's life". No it's not that simple, it's a debilitating fatigue. A fatigue so great I try my hardest to get out of bed but am so tired that I fall back asleep. I'm scared to drive because I've fallen asleep before at the wheel and don't want it to happen again. I can't even hold a conversation with people because all it does is go in one ear and out the other, I cant focus and Brain fog is the worst. And I'm the type of person who was always super driven, athletic, energetic, and just loved life. I am so sick of this fatigue ruining my life. I am new to this area and can't even meet friends now because I have no job and am too tired to go out and meet people. So naturally this has led me down a path of depression and I just can't seem to get out of this hole. Does anyone have any advice on supplements or anything they've tried that WORKS?? I'm so desperate I will try anything. Please help.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/13/2017 7:29 AM (GMT -7)   
Hi Gemma & welcome to the forum. I can relate to a lot of your issues such as CFS, depression/anxiety & Gerd. It seems like CFS never stands alone. The depression & anxiety forums on Healingwell are very active, this forum is not. I like to come here every week & check to see i anyone has posted.

You are exactly right, the fatigue is different, it is not just regular "gee, I am tired I will go to bed & rest & tomorrow I will be good". No, we wake up tired because our bodies do not make the energy we need, I am hoping they will soon find the answer why this is happening. This is why pacing works for us, we can not do what we used to do, we just don't have the energy. I am sorry to say I have not found anything that has helped me to have my old life back. My vitamin D levels were really low & I take D3 everyday but it only helped a little. I found that getting a good nights sleep has helped me the most. I take Tizanadine, a muscle relaxant, to go to sleep & Trazadone to stay asleep. I still wake up fatigued but I do have a lot more clarity of mind & I can think & be part of my family. As I said pacing helps me to get things done around the house but I have to say that my home is nowhere near what it used to be, my standards have had to give way to what I can do as opposed to what I would like to be able to do. I had to let go of my old life & make a new life. As you can see I do ramble a lot because I have trouble following a train of thought to the end. lol but I have learned to live with it & live within my boundaries. Where I used to garden, hike, work, fish, camp, etc, I was very active. My life now is very sedentary but I get to read & learn a lot, I study my Bible often, I read up on plants & flowers because my daughter put in totes for me to plant a few things in. I do what I love but on a smaller scale.

I hope you find your answers, we all have to go through a trial & error on different things we need to try. I have tried eating many different ways & giving up things like flour or sugar for months to see of it helped. I did find I was sensitive to soy so I stayed away from it for years, I have reintroduced it slowly & can now eat it again. I have tried exercise until I realized that was a no go, etc. You have to finally come to a place of acceptance, then you rebuild a new life. I don't know where you are in the process but it is all important, all needs to be gone through.

Once again welcome, post as you need to & others will come by too. Let me know how it is going for you. Hugs, Denie
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Gemma25
New Member


Date Joined Jan 2017
Total Posts : 7
   Posted 1/13/2017 3:43 PM (GMT -7)   
Denie,

Thank you so much for your reply. It's nice to know others feel the same way. It has become a very isolating life and I literally have to plan my days to make sure I can get at least one thing done..like go to the grocery. lol I feel like such a loser that my biggest event is the grocery, and then I have to rest. It's not a life I wish for anyone and I wish CFS would gain more attention. It's such a miserable feeling. I'm basically starting from zero right now and trying to accept my conditions.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/14/2017 2:14 AM (GMT -7)   
Hey, I know what you mean about going to the store, I come home with such a feeling of accomplishment. lol. I loved my job so much & really hated to have to quit but I just couldn't do it anymore. I used to get my feelings of accomplishment from that. My boss thanked me when I said I couldn't work anymore so I knew they were wondering what to do about me. They didn't want to have to fire me. Now that I am not working I seem to be able to spread out my energy throughout the day & sleep as I need to. I have better days now & sometimes it makes me think I can go back to work but then I remember what it was like. I actually went in several years ago & told my old boss not to take it seriously if I ever came in & said I would like a job. I have finally come to acceptance & know I can't work ever again unless they come out with a med that works or a cure. Working was the last thing I had to accept that I was not capable of doing. I see I wrote my name wrong in my last post, it is Denise. My fingers went faster then my brain. Take care of yourself, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 910
   Posted 1/14/2017 7:58 AM (GMT -7)   
The piece that many people overlook is their jaw. I had terrible IBS and cured it by seeing a biological dds. Sounds like you have tried many things-try a biological dds before you give up.
An infection in you jaw can cause systemic issue like what you have

Kct
Regular Member


Date Joined May 2016
Total Posts : 109
   Posted 1/16/2017 12:08 PM (GMT -7)   
Get checked for Lyme and Sleep apnea. Turns out that's what I was diagnosed with. Problem is I'm not any better with the treatments 6 months later.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/2/2017 3:40 PM (GMT -7)   
The reason CFIDS "does what it does" is because the primary vector of the autoimmune condition is cell mitochondria. Mitochondria is where ATP is synthesized, which is the energy that fuels much of the body's functions. "Fatigue" is not really an adequate word, though, as you are aware. Even the brain cells lack ATP, which makes them work more slowly and less efficiently, hence, brain-fog.

I was officially diagnosed with ME/CFIDS in 2013, although I had been experiencing symptoms for about seven years previous to that. I've been taking low-dose naltrexone since August of 2013, and I am now functioning normally, and 90% of the sudden-onset arthritis was reversed as well. Unfortunately, the LDN doesn't help with the headaches, though.

Bruce

Hummingbird77
New Member


Date Joined Feb 2017
Total Posts : 1
   Posted 2/2/2017 11:43 PM (GMT -7)   
Hi Gemma
I am also new to this forum, but wanted to say that my son has suffered from ME/CFS for 7 years. He is 19 and we live in the UK. We thought that there was nothing much that could be done for him, until I read a book called "Healing is Possible" by Dr Neil Nathan.
We have now come out to the US and the doctors are working really hard to find out what is actually going wrong in his body. So far, we know that mould is a big factor. He is also being tested for lyme. He had a lyme test 3 years ago and it was negative, but the testing is still not that great for it. My suggestion would definitely be- don't take no for an answer from any doctor- find one who will take you seriously and who will try find out what is going wrong in your body.

garnet10
New Member


Date Joined Jul 2016
Total Posts : 6
   Posted 3/17/2017 12:18 PM (GMT -7)   
magoo2, would you be willing to share your biological dentist's name?

I developed SEID (Systemic Exertion Intolerance Disorder), the new "name for CFS, after root canal. I had the root canal teeth removed and zirconium implants placed, but I still have aching in my jaw, and my dentist and oral surgeon cannot find anything.

I don't get a good feeling from the local "holistic dentist" so I am looking for someone else.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 910
   Posted 3/17/2017 7:14 PM (GMT -7)   
Margolis in Mesa. Arizona-great guy very direct-very good

Dancing Dawn
Regular Member


Date Joined Feb 2015
Total Posts : 87
   Posted 3/20/2017 8:45 PM (GMT -7)   
Hello Gamma and welcome, This morning I wrote a rather long entry and since I hadn't logged in
first, it wouldn't go through. In a nutshell, it said 'I know how you feel'. I have not worked for
ten years and stopped working when I was 63. When my energy was decent, I would volunteer
and that helped me stay connected with people. Now I am susceptible to more things so working
with children isn't really an option. During that time, I was treated by an alternative doctor for
CFS and Lyme. I still take a lot of supplements and follow a healthy diet. That has helped keep
me in a good place. I am gluten sensitive and feel much better without it. Mainly, I eat
fresh fruits and vegetables, and have green smoothies in the morning.
At times, I take D-Ribose, Eleuthero by Oregon's Wild Harvest,says to adapt to
stress naturally, ( organic), drink green
tea, take my B-vitamins, eat some mushrooms and take garlic capsules now and then.
I also use thyroid and adrenal scripts.
Everyone's different with vitamins and I'm not saying this is what will work for you,
but I know it's helped me.
Have you been working with a good doctor? Have you had your thyroid tested on a
regular basis? That made a big difference for me.
I was able to do better when I stopped
working because I could rest when I needed to and I could go to a support group and
learn more about what I was dealing with.
Good wishes with this and keep us posted if you would.

addctd2plnts
New Member


Date Joined Jul 2017
Total Posts : 2
   Posted 7/8/2017 7:23 PM (GMT -7)   
Hi Gemma,

Wanted to say I understand the fatigue. I'm a surgeon and the best way to describe it is to ask the Dr. if he/she remembers residency and when they were up for days at a time. You get to a point where you basically can only think about sleep and how to sneak off and get even 10 minutes of it in the hospital library. THAT'S the same fatigue we have! I also wanted to let people know, and I'm sure somebody will get on and disagree, that when I finally described this to a MD/Phd (the really wicked smart ones who get 8 years of degrees at the same time in FIVE years) he told me that his office had done the drug trials on Modafanil and he had several patients with CFS that said their lives were truly changed by it and were able to work ONLY because of it. Dr. cannot prescribe it with a diagnosis of CFS. They MUST use "Work Sleep Disorder" or insurance won't pay for it, but it has truly changed my life. The "Fibro fog" is GONE. The urge to crawl back to bed is GONE and for some reason, almost all my dizziness is gone. I won't say all fibro pain is gone but I can exercise and ignore it (I do take Cymbalta for Fibro pain). Honestly, I am in medicine and it suprised me. I think it's worth a try in every CFS patient but you may not get anyone but a psychiatrist who is very educated to give it to you. Not sure if internists would know anything about it. Hubby and I are both Drs (not internists) and we didn't. Hope it helps at least one person!

EBVRecovery
New Member


Date Joined Aug 2017
Total Posts : 2
   Posted 8/3/2017 11:19 AM (GMT -7)   
I don't know if this is still active or if anyone will read this, but it's definitely worth a shot if it can help ANYONE who like me, was desperately looking everywhere for a solution to this awful disease.

After 7 months of feeling completely run down, desperate and falling into depression because it really did feel the rest of my life would be like this, two things helped me: Monolaurin and Reishi mushroom supplements. They're both over the counter, but WOW. The difference they have made. I'm not 100% healed, I'm only a few days in, but I'm about to cry tears of joy over this lifeline. I had tried EVERYTHING, antivirals, B12 injections, bedrest for weeks, nothing was making a difference, I just felt like I had run a marathon and constantly exhausted.

Just google Monolaurin, look at all the research on it about the ways it stops and kills EBV, and that'll probably disperse whatever doubts you may have. I hope this helps someone. If anything it's definitely worth a shot, it's a very cheap supplement. I took the 500mg Monolaurin supplement 3, sometimes 4 times a day and that along with the Reishi supplement have started to finally turn my life around.

Blissy10
Regular Member


Date Joined Jul 2016
Total Posts : 43
   Posted 9/19/2017 4:56 PM (GMT -7)   
I have CFS depression fibro anxiety and I COMPLETELY understand how you feel. I tutor 4 hours a week and that is all
I do that so that I can help with med bills. I haven't been to any holiday dinners reunions nothing for 3 years. I have had problems with doctors and health tanking worse due to the dr confusing fibro and cfs and over treating for depression which sent my diabetes up to 520 . I have been so frustrated and the more frustrated the more tired I get. And I resent having to get out of a chair because It hurts so bad. This is the worst time of my life. I have a grandchild coming and all I can think is how will I interact and enjoy them? You are not alone, and it is a lonely life. 3 years ago I walked 4-8 miles per day, went to lunch, visited folks, engaged my students and enjoyed dressing for work in pretty clothes. Now I don't even hang those clothes up. I drape them over the foot of the bed. I have a lovely life but I cant enjoy it and that's the odd part of it. I keep waiting for things to change... If you need to talk message me Gemma. Much love.

Post Edited (Blissy10) : 9/19/2017 6:25:16 PM (GMT-6)


Faith224
Regular Member


Date Joined Sep 2011
Total Posts : 275
   Posted 10/8/2017 2:24 PM (GMT -7)   
Hi Gemma,

Is it possible you have reactive hypoglycemia? Also, how is your bp? I get debilitating fatigue so I have been adopting a paleo-type diet to avoid sugar highs and lows and drinking a lot of water (I used to laugh off this suggestion but it really made a drastic difference.) I found that I would be very fatigued in the morning and in between meals until I made these changes.
Feel Good,

-Faith
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